"It’s hard giving your child four to six injections a day, when you know it hurts. It’s hard getting up every night through the night to check blood sugar levels. It’s hard when your 10-year-old has never had a sleepover and wants to go to one more than anything in the world but you have to say no, because it’s not safe. It’s hard dealing with people’s misconceptions about type 1 diabetes because the media focuses on type 2 diabetes."
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Eloise Starr of Taree is quick to identify many hard things about helping her daughter, Annabelle, to live with type 1 diabetes - so much is out of her control, so much she cannot change - but on World Diabetes Day, November 14, she is sharing Annabelle’s story to shift attention to type 1 diabetes. Her hope is that their story will help to end the perception that diabetes “is only caused by wrong food choices.”
Type 1 diabetes is not a lifestyle disease. We wish it was called pancreatic autoimmune disease or something that could convey its severity to people.
- Eloise Starr
“If it had a different name there would be more understanding and less assumptions,” Eloise said.
“People think it’s just about food and that you’ve eaten too much or something like that,” adds Annabelle. “It can be really hard.”
Annabelle was four years old when “her pancreas just gave up producing insulin.”
“I was feeling really sick and dizzy, I had feelings that I had never felt before. Mum knew something was really wrong so she took me to the hospital,” Annabelle said.
“When the doctor told me that Annabelle had type 1 diabetes I remember sinking to the floor in a heap, and as I had Annabelle with me I got Nanna to take her out of the room. When the doctor told me what it entailed I remember feeling shock for quite a while,” Eloise said.
“You need to replace insulin and you can't do it in tablet form, like you can with type 2 diabetes. It involves injecting insulin, two different kinds of insulin - one is long acting which goes through your body in 24 hours, and the other is a short acting that you take to cover the food that you eat,” she explained.
“So Annabelle will have long acting insulin at breakfast and then she will have probably three to four injections during the day of fast acting insulin - so she'll have it with breakfast, with lunch, with afternoon tea and dinner.”
Eloise describes her daughter as “very, very, very brave.”
“If you don't do your insulin right, there are lots of things that can go wrong,” Annabelle said.
Your organs could be damaged, in a worst case you could pass out and not wake up again. I get freaked out sometimes but I know that mum and dad wouldn't do anything wrong and I feel safe.
- Annabelle Starr
Eloise says “having a diabetic child is like having a newborn.”
“You've got to get up and do a midnight and a 3am check just to make sure their blood glucose levels aren’t dropping – or they are not far too high – and if they are far too high you need to correct that with insulin, so a good night's sleep is a thing of the past.
“I check her by giving her a pinprick. If she needs treating, I will get a yoghurt in a squeeze pouch out of the fridge and say, ‘open your mouth’. I'll squeeze the yogurt into her mouth and then say, ‘swallow’, and Annabelle does that in her sleep. She doesn't wake up, which is great because she is used to it.
“I think one of the biggest things people don't comprehend about type 1 diabetes is that the parent becomes the caregiver, the specialist – you are it. With type 1 diabetes, it's just yourself, day-in and day-out, you’re adjusting the amount of insulin, you're doing the carb counting, you're doing the guess work, and it's completely different to anything else.”
Eloise says people will often ask, “when is she going to be stable?”
“It's never going to be stable, it's not a condition that will ever be stable. Everything affects it from the heat, the cold, exercise, if she is stressed, if she gets sick, everything.”
Annabelle and Eloise share that the last 12 months have been “very difficult because insulin and hormones just don’t mix.”
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“As Annabelle gets older it will become more challenging. We've had crazy levels from extremely high to extremely low, with no explanation. The doctors say it's just the hormones; we know it's frustrating but there is nothing we can do about it.
“That has been really, really hard and as she gets older that is something we will have to deal with but technology is improving, which is a great thing.”
Annabelle now has access to a machine that can be attached to her abdomen or on the side of her arm for about six days at a time. It constantly monitors her blood glucose level and sends information to Eloise’s phone.
Eloise says “it does hurt Annabelle but she is very, very brave.”
“She steels herself up and gets herself in a place so we can press the button to insert the needle into her skin. I can see that it hurts, and it’s not the most comfortable thing to wear, which is why we don’t love using it. There are good things and bad things and I’m not sure what outweighs what at the moment.”
Eloise and Annabelle both know there is little they can contribute to type 1 diabetes research and treatment and say, “it’s hard knowing there’s no end in sight, no cure”.
Their hope is that their story will help to educate our community about type 1 diabetes “because it’s hard dealing with people’s misconceptions” caused by the increase of type 2 diabetes in the Australian population.
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